By Miriam Bernard

Stay-at-home mom, attorney, engineer, wife, French student, networker, and Zumba enthusiast are all badges one could use to describe Atlanta native Deona Kalala, and as of January 2023, “Member of the NODCC Board of Directors” can be added to this impressive list. Let’s get to know Deona, the newest addition to our NODCC Board, and find out why our leaders felt she was such a great fit to help guide our organization in 2023 and beyond.

Upon discovering a loved one had agenesis of the corpus callosum, Deona began learning everything she could about ACC and brain anatomy. Like so many just entering the “world of ACC” she consumed a great deal of information in a very short time, even to the point that doctors with whom she spoke would ask if she was in the medical field. She was quick to note, however, that because ACC and DCC involves such a spectrum, and because there is so much research out there, the inundation of information was overwhelming. This is where her discovery of the NODCC came about, and positively impacted the information flow in a way Deona and her husband could better digest and “funnel” the information to help their loved one in more meaningful ways.

Deona became aware of the NODCC in 2020 during the pandemic. She and her husband spoke with the NODCC’s Managing Director, Barb Fonseca, and they became involved remotely, due to the lack of meetings and conferences during the pandemic. When the NODCC yearly conference returned in 2022, Deona was able to attend, and immediately began growing meaningful connections with many other NODCC community members. She also attended an IRC5 presentation before the conference.

Deona shared, “The IRC5 presentation was extremely helpful because there were all of the experts who were writing studies I had been reading. I could hear their cutting-edge research and ask the questions I thought were really relevant to my loved one and their situation. It helped me to be able to say ‘Okay,this is what you meant by that. I understand that term now.’ ” Through these events, Deona gleaned context she hadn’t found just sorting through facts online.

The journey from 2022 Conference attendee to board member was a quick one, and occurred because Deona expressed to how impressed she was with the conference and began sharing ideas and visions she had for the future of the NODCC organization. Her background as an attorney gives her a unique perspective to think about disorders of the corpus callosum from a legal and law-making standpoint, and the 2024 NODCC conference location of Washington D.C. puts Deona and the rest of the board in proximity to authorities in our nation’s capital who can create positive change and bring awareness to DCCs. She and the board are putting together big plans for what they hope to accomplish during their time in Washington D.C.

This brings us to the specific goals Deona has set out for herself as a board member:

The first she spoke about is to take advantage of the conference’s upcoming location in Washington D.C., and to advocate to those in Congress and different health entities to build awareness about agenesis of the corpus callosum. Also, the insurance coverage for families with a member with an ACC varies widely from state-to-state, and the educational coverage through the IEP process varies from state-to-state. Deona wants to advocate for more equal access to services, and with her career in law, feels equipped to help make that happen.

Her second goal stems from a personal experience she had at the 2022 NODCC conference. By happenstance, Deona met two other individuals with loved ones with an ACC, and they were in the exact same situation, taking in the firehose of information and sorting through it all. She’s remained friends with them to this day, and it has made her experience navigating ACC so much better. Therefore, another goal she has is to create more of those types of opportunities for people to make meaningful connections with one another and build a supportive community.

Deona stated her third intention as a board member beautifully. “My last goal would be to make sure that the organization reflects the diversity of folks that have ACC. I want to make sure we’re getting the word out to diverse communities and that they’re feeling welcome when they get here. I’d like to help make sure awareness about ACC and the wonderful resources of the NODCC are reaching as broad a population as possible.” What an excellent set of goals.

Deona’s experience thus far as a board member has been very positive, and just like being at the conference, she has been inspired by the hard work and dedication of everyone on the board.

She states, “Everyone has been very thoughtful; very dedicated. I hope everyone who is a member of the NODCC knows what powerful advocates they have working behind the scenes for the families of people with and with ACC and for folks with ACC.”

Deona lives in Atlanta, Georgia with her husband and three children. She has a background in several impressive fields, including economics and engineering, but she has spent the past ten years as an attorney. In the last eight months, however, she put her law career on pause to take on the important role of stay-at-home mother. Deona shared, “I’m super excited about this new chapter of my life. My days have made a complete 180, from 12-hour work days in the office, to 24-hour work days at home.” When not chasing her kiddos, she enjoys taking Zumba classes, and even takes French lessons to grow closer with her French-speaking in-laws from the Congo.

The NODCC would like to give a heartfelt welcome to Deona Kalala, and we have been so fortunate to learn more about her. We’re thrilled she has joined our board, and look forward to hearing all the excellent progress our organization is able to make thanks to her impressive skill set and unique perspective. Welcome to the team, Deona!